Please Don't Be Sorry My Son Is on the Autism Spectrum

I had an experience today that didn’t sit well with me. After a bit of contemplation, I think I’ve figured out why.

Here’s the set up: I had a dental cleaning today (and can I just interject that I really, really dislike dental visits on a good day); my dentist popped in to say hi and check on the family, asking specifically how Evan was doing. After she left, the hygienist asked what was wrong with him, and I told her he has autism. Her face fell and scrunched up all at the same time, her shoulders dropped and her hand when to her heart, “I’m so sorry,” she said.

I immediately felt weird about her reaction. I didn’t feel right. Her reaction didn’t feel right.

“No, it’s OK,” I said, sitting myself taller in the chair, “He’s good.”

The hygienist went on, “My aunt’s daughter had ash-berger’s, and she went through hell.” Yes, the misspelling is intentional. You can imagine my eye strain as I withheld my eye roll, though I couldn’t even vocalize a reaction because I was still taken aback by her first comment.

To be fair, this woman meant no harm or disrespect with her statement. In fact, she was doing her best to be empathetic and connect with me. The Gretchen of five years ago, honestly, would have either started crying or said, “thank you,” while appreciating that someone was acknowledging my struggle. The Gretchen of one year ago would have felt the same, but without the crying.

But, today… today’s comment felt unwelcome, unwanted, uncomfortable.

So, what’s changed? How did I go from there (yes, please feel sorry for me) to here (I don’t like the way that comment feels)?

Somewhere along the line, within the last year (the last six to eight months really), Evan became aware. He’s trying to figure out this autism thing, what it means inside his body, and what it means out in the world. From Day One of his diagnosis, we said we would never, ever be embarrassed or ashamed of autism, and that is what we’ve taught him. Yes, there are tough days and hard work, but autism is also amazing and we are trying really, really hard for him to see that in himself.

Just a few days ago, Evan was making a comment to me that started, “some autistic people…” which really made me pause. It was the first time I’ve heard him talk about autism in language that is not “People First.” Parent advocates have fought tirelessly for everyone to adopt “people first language,” which places the person before the disability: the person with autism, versus the autistic person. This is somewhat controversial within the autism and general disability community because there are many people with autism and other disabilities who prefer “identity first language,” resulting in people who proudly call themselves autistic. In general, our family practices people first language; we rarely refer to Evan as “autistic” but instead say “he has autism.” However, when I heard him say, “some autistic people…” he meant people like him, and what I felt was pride. Not shame. Not degradation. Not disadvantaged. This, this is exactly what we are trying to instill in him.

I think what made  me so uncomfortable earlier today was I saw pity in the look the hygienist gave me. Pity, however, is not even in my emotional catalog and I didn’t like the way it looked when she offered it up.

You can feel sorry for my stress, you can feel sorry for Evan’s stress, you can feel sorry for the hardships that surround us. You should never, not ever, feel sorry for Evan. I would never strip Evan of his being. What I learned today was how far I’ve come emotionally on this autism ride, and more importantly, how great Evan is doing in his personal acceptance of being an autistic person. Relentless forward progress.